The pediatric surgeons in our team have practiced for decades, and have found the greatest satisfaction not in the actual surgery, but in the opportunity to counsel, comfort, and care for each child and parent who came to our practice. But the way we surgeons communicate with our patients leaves much to be desired. Some surgical procedures routinely performed in children may not need to be done, and in those instances up to 30% of parents experience decisional conflict (“a state of uncertainty about the course of action to take”), and one in 2 parents may experience regret (distress or remorse after the decision to have surgery).
Shared decision-making (SDM), the process where patients and clinicians make decisions together based on up-to-date medical evidence and patient values and preferences, reduces decisional conflict and regret and improves care. Unfortunately, despite the apparent use of SDM, communication between patients and their surgeons remains suboptimal, and the quality of shared decisions is variable. Even within standard SDM risk information, “the open two-way exchange of information and opinion about risk”, is mostly based on surgeon-centered experience and complication frequencies. The situation is even more complex in pediatric surgery, where parents are typically the decision makers – hence we refer to the parent-child unit as the “patient”.
In our lab we explore the process of patient-surgeon through multiple lenses, frameworks, methodologies. Some of the questions that preoccupy us are:
- What information do patients need to make informed surgical decisions?
- How do patients’ perceptions of the risk and negative impact of adverse events influence choices?
- What are patients’ preferences for communication content and format?
- How satisfied are patients with how we obtain informed consent from them?
- What makes our patients trust us as surgeons?
- What are the patient-valued outcomes after minor and major pediatric surgery?
- Can patient-generated indices provide a fuller picture of how children fare long-term after congenital surgery?
- Can AI help us improve the way we communicate with our patients, both before and after the surgery? What does “precision communication” look like?
- How can patient partners assist us in our patient-centered research? Can we reach “patient-partnered precision communication” (P3C)?
The methods we use to answer these questions include surveys, focus groups, systematic and scoping reviews, and the ongoing development of a technological platform for patient-doctor communication. The slides below highlight some of the actual projects our team is involved in.